Nicole Qualifies for the LPGA US Open!

Guest Post
By Nicole Jeray, LPGA Golfer
May 16, 2013

It’s not easy to qualify for the US Open. A lot of players for only a few spots and the venue of 36 holes in one day. That’s 9-10 hours of golf with no break. Very difficult for me since I have narcolepsy and I’m not as young as most everyone else.


Since I just played 3 LPGA events in a row including 14 straight days of golf, I chose not to play a practice round. Elkridge Club in Baltimore, MD, was hilly and tricky. Others thought I was crazy to play the US Open Qualifier “blind.” But I knew I needed my energy for the tournament and I also have a lot of faith in my boyfriend/caddie, Jody Keepers. Jody walked the course while I got the rest I needed. Since he is an experienced caddie and knows my game very well, I knew I could rely on him to point me in the right direction. My priority was to have enough stamina to play 36 holes in order to perform the best I possibly can.

The next morning our tee time was 8:10. Unexpected traffic and a train made us extremely late. We finally arrived at 7:45, just enough time to put my shoes on, hit a few putts, and walk to the tee. By the 5th hole, it started to rain and didn’t stop until we were done 9 hours later. At times it was a torrential downpour and other times the rain was very light. I fought with my rain jacket all day and opened and closed the umbrella at least a dozen times.

First round, I shot 71, with an eagle and a birdie. Looking good so far, but my left knee was starting to hurt and my legs were already tired. I was concerned about my next 18 holes in this awful rain and with heavy legs. Needless to say, I made it through all 36 holes and played good enough to get a spot in the US Open. I finished tied for 6th place with scores of 71,72. Yippee!!!

The Women’s US Open with be played at Sebonack GC on Long Island, NY, June 24-30.

Note: From time to time WUN posts blog entries written by third parties for the benefit of our readers. Follow Nicole’s 2013 LPGA season on her blog at http://www.nicolejeray.com/blog/. And please consider a donation to WUN through Nicole's Swinging for Sleep campaign.

This Is the Week to Wake Up Nashville! 

It's the Bridge Between Light and Dark, our third annual Wake Up Nashville! event for narcolepsy awareness. June 21 at 7 PM, at the handsome Bridge Building in downtown Nashville. Learn all about what's in store from Music Row's Bob Saporiti, our host for the evening, and Dr. Kelly Carden, of the Middle Tennessee Center for Sleep Center here: 
http://www.wsmv.com/video?clipId=8993062&autostart=true

A limited number of tickets are still available at https://www.wakeupnarcolepsy.org/events/wake-up-nashville/wake-up-nashville-2013/

Vote for Kristen!

The entire narcolepsy community is thrilled to support Kristen Girault, this year’s Miss USA contestant representing Louisiana! 

Kristen is living with narcolepsy. She recalls school teachers throwing erasers at her when she would fall asleep in class. But narcloepsy hasn’t derailed her career goal in nursing. She feels her calling in life is to help save lives.   

Kristen has been dancing for 19 years and is currently a cheerleader for the NFL New Orleans Saints. 

Clearly narcolepsy hasn't slowed down this amazing young woman.  

Vote today to move Kristen on to the semifinals of the 2013 Miss USA competition! 

The Curious Tale of Narcolepsy and Dementia: Discovering the Cause

Dr. Mignot and WUN's Monica Gow

By Dr. Emmanuel Mignot, director of the Stanford Center for Sleep Sciences and Medicine.

HuffingtonPost, 6-11-13

Dr. Mignot, whose research is funded in part by Wake Up Narcolepsy, discusses Autosomal Dominant Cerebellar Ataxia, Deafness and Narcolepsy, or ADCA-DN. This terrible disease is characterized by narcolepsy evolving into neuropsychiatric problems and dementia.

http://www.huffingtonpost.com/stanford-center-for-sleep-sciences-and-medicine/narcolepsy_b_3327304.html

Bridge (n.) A structure carrying a pathway over an obstacle; here narcolepsy, a poorly understood, debilitating, and lifelong sleep disorder that can cause confusion, depression, humiliation, or worse.
Light (n.) Knowledge or enlightenment.
Dark (n.) Not clear to the understanding.

 
Please help us build a bridge between the dark misunderstanding of narcolepsy and the light of knowledge, acceptance, and hope for those battling its symptoms. Join us on June 21 for the Bridge Between Light and Dark, a Wake Up Nashville! event promoting narcolepsy awareness.

We’ll also be crowning the winner of our third annual Wake Up Nashville songwriting contest. Plus, enjoy great Nashville entertainment, and delicious hors d’oeuvres and desserts.

People living with narcolepsy, their loved ones, physicians, artists, record executives, and supporters – all coming together for a very special evening to promote narcolepsy awareness. 

Friday, June 21
The Bridge Building (of course)
2 Victory Avenue
Nashville, TN 37213

Free for people living with narcolepsy. All others $25 per ticket.

Details, tickets and song contest submissions at https://www.wakeupnarcolepsy.org/events/wake-up-nashville/wake-up-nashville-2013/

Spreading Awareness at Sleep 2013 

Rachel Moon and Monica Gow

Earlier this week, WUN made many more friends at Sleep 2013, the world's largest conference of sleep professionals, held this year in Baltimore, MD. WUN Executive Director Monica Gow and Communications Director Ken McDonnell staffed our information exhibit in the massive Baltimore Convention Center. WUN quickly became a magnet for conference attendees – sleep and family physicians, sleep researchers and technicians, and many hundreds of others with a professional or personal connection to sleep disorders.

Our free WUN T-shirts were a big hit, and we nearly ran out of them on Day 1 of the conference. Still, visitor traffic remained steady and enthusiastic for all three days. We were able to have extended conversations with people interested in and supportive of our work. On many occasions, people offered sincere thanks for our service on behalf of people with narcolepsy.

The conference also was an opportunity to strengthen existing relationships with our existing partners and begin building new ones. We were excited to spend time with the beneficiaries of our research donations, including Dr. Emmanuel Mignot, of Stanford University; Dr. Thomas Scammell, of Harvard; and Dr. Indra Narang, of Sick Kids Hospital in Toronto. As well, Dr. Kelly Carten, of St. Thomas Health Care, Nashville, a stong advocate of WUN’s work, gave us a great deal of her time in Baltimore.

On Tuesday we were joined in the booth by Rachel Moon, a sophomore at Atholton High School, in Howard County, MD. Rachel came to Sleep ’13 to fulfill a portion of an independent research project, a year-long, college-level project on a topic of her choosing. Rachel studied the autoimmune nature of narcolepsy. Read an abstract of her project at https://www.wakeupnarcolepsy.org/wp-content/uploads/WUN-Rachel-Moon-abstract-for-WUN1.pdf.  

During her visit, Rachel greeted visitors and spoke about WUN and her research project. She also made a semi-formal presentation of her work, as her project required. Rachel tells us she may pursue a career in medicine, but whatever she does in life, this mature, personable young woman will go far! Thank you, Rachel, for lending a hand and sharing your enthusiasm, charm, and poise.

We’ll be off to Sleep 2014 next year in Minneapolis to make more friends and spread the word about WUN and our work to improve the lives of people everywhere living with narcolepsy. Hope to see you there!

Pictured: Rachel Moon and Monica Gow in the WUN info exhibit.

New Research Demonstrates People with Narcolepsy Face Significant Health and Economic Burden and High Rates of Misdiagnosis

June 5, 2013 -- Baltimore, MD -- Today at the Sleep 2013 conference, researchers unveiled data that demonstrate people with narcolepsy face significant personal health and economic burden. The Burden of Narcolepsy Disease (BOND) study, the largest of its kind and the first in the United States, found that patients with narcolepsy, with or without cataplexy, were more likely to suffer from a higher frequency of comorbidities such as mental illness, endocrine disorders, digestive disorders and cardiovascular disease, and had more than twice the mean annual medical costs compared with the general population.

Read more.